TYSON MATTHEW KOTTELENBERG


"The Lord is faithful to all His promises, and loving toward all He has made." Psalm 145: 13b

This blog is about our eight year old son Tyson. Tyson was born with serious complex congenital heart defects, (Hypoplastic Right Ventricle, Tricuspid Atresia, Coarctation of Aorta, Transposed Great Arteries, with VSD and ASD.)
In short, the right side of his heart is completely under-developed (he has half a heart,) his main arteries are mixed up, and his aorta is narrow. He has undergone 3 open-heart surgeries and 5 heart cath procedures to try to 'repair' his heart. Sadly, Tyson has also been diagnosed with pulmonary vein stenosis, a fatal disease in the veins of his left lung. Typically, having the 3 palliative surgeries buys children with single ventricle hearts many years before eventually needing a transplant. But because of the narrow pulmonary veins, this increase in pressure is causing his blood to shunt the opposite way across his Fontan fenestration and surgeons are not able to close the fenestration. As a result, he remains on coumadin and is heading down the transplant road faster than we'd originally anticipated. He's still doing AMAZINGLY well all things considered. We entrust our dear son into the hands of God, knowing that in all things God works for the good of those who love Him!

Sadness and Joy: A Reflection

I just read this interesting article today that kinda made me laugh.

http://findarticles.com/p/articles/mi_m0FSZ/is_1_28/ai_n18613376/
(Sorry, for some reason the link won't work...)

It basically says that parents of children with severe congenital heart defects experience more stress, as well as more sadness and anger than parents of healthy children. Though I didn't read the article in its entirety, and though I do agree with this statement, I have to hope they didn't spend too much money researching this "phenomena" because I could have made this same conclusion for them for *FREE*! Of course parents of children with severe heart problems experience more stress! I shake my head that they actually took the time to research this query!

One thing that the article did fail to point out is the immense JOY that parents of heart babies can feel over the simplest things in life. Like today, for example, Tyson walked with me all the way to Henry and Marg's driveway and back again without getting tired. Like, he walked it himself, no stroller involved. He actually wanted to walk farther and longer but the clouds were threatening rain so I coaxed him back inside again. This is huge for Tyson, who normally can't walk the length of our driveway, or the church parking lot without turning funny colours. The things most parents take for granted are huge milestones for us heart parents. This gives me so much joy. When Tyson nursed for the first time again after his first open-heart surgery, the first time he waved bye-bye, sat independently, pulled to a stand, took his first steps and spoke his first words, the tears just come from out of nowhere. No warning. No "look out, I'm coming!" They're just *there.* Perhaps because ever since I've become a heart Mom I've always been on the verge of tears. Not always happy tears, mind you. Sometimes the tears flow while I'm in the middle of a tight hug with Tyson, but they aren't only tears of joy. Tears of fear more like it. Tears that make me wonder, "How long will I get to hold onto my little miracle?" LORD, help me to hold on to these memories, to appreciate every single moment of his life, and never forget what a blessing Tyson is.

I am guessing that the reason for my emotional ride today is because Tyson's third birthday is quickly approaching. THREE! My miracle baby is going to be THREE!! I am so thankful that God has blessed us with three years with this wonderful kid. And he really is a wonderful kid. For those of you who know Tyson, you know how much of a character he is. He is just great! He keeps us laughing all the time. He has this thing where he gives people the thumbs-up at the funniest times. Most of the time he will give me the sign on his way up the stairs, with his hockey stick and ball in the other hand...knowing he's not allowed to come upstairs with them. Or he'll try to butter me up first with an "I love YOU, Mom!" and a sparkle in his eye. I just look him straight in the eyes and stare. And then he slowly withers his way back downstairs with said hockey stick and ball and a hurt look on his face. But the thumbs-up sign is the cutest. He will see someone he knows sitting on the other side of the church and give a big cheeky grin accompanied by the thumbs-up sign. It sure generates a lot of smiles from others too. He even gave one minister the thumbs-up sign when he looked down at him from the pulpit.

The other day, I was thinking it's about time I try to toilet train this kid; he's almost three and it can be done. (Besides, I'd love to enjoy at least a few diaper-free months!) So I've been talking with him about the toilet, wearing underwear, and I said that if he learns to do all his jobs on the toilet, he gets to wear his "Cars" underwear. To which he responds, "No! Underwear is DUMB!" Gotta love that kid! Toilet training him could prove to be a very interesting experience...

He's also been extremely healthy the past few weeks. With 02 sats back up in the high 80s-low 90s, we are ecstatic about the work God is doing in his heart and lungs. Brian and I can't help thinking that either his fenestration is closing on its own, which it can sometimes do, or that God is working a miracle in his left lung and the disease is not progressing. His next cath is scheduled for Dec 5 in which they plan to attempt a fenestration closure again and assess the severity of the stenosis (narrowing) in his left pulmonary veins. The fenestration closure, if successful, will bring his 02 sats even higher and give him more breathing room for this winter when he inevitably will get sick. I am feeling anxious about this procedure already, and we're still well over a month away. I hate that this amazing little boy has to endure such invasive procedures so often. And I also hate admitting to the possibility that he may face another open-heart surgery in the future. The cath in December will give the cardiologists a good indication of what exactly has been going on in his hearth and lungs the past six months. Is his heart finally adjusting to the Fontan circuit? Can they indeed close the fenestration now? Has the stenosis in his left lung progressed? Sadness and Joy. Two emotions we feel at the exact same time each and every day. We confess and acknowledge that God is so good, yet each and every day I am still so scared for his future.

Ok, now on to more joy. I like that topic better :) Each and every day Tyson's appetite seems to increase. This is a huge blessing because a LOT of heart babies (and I mean A LOT...probably the majority of heart babies) cannot eat normally but are fed by either Ng tube or a permanent G-tube surgically placed into the stomache. Or they suffer from severe reflux issues. Tyson is also beginning to become more independent when he eats, doing most of the work himself. Now at almost three years old, most kids have been eating on their own for about a year or more. But not Tyson. He has been finicky and picky and very difficult at times. He continues to gain weight despite his heart burning off more calories than the average child. When Brian and I watch him eat at dinner time these days, we can't help but be thankful and reflect on how far he's come. It's amazing that a kid who has gone through three open-heart surgeries in the first two years of his life can still be so "normal."

Tyson's speech is continuing to improve every day too. He seems to be talking a-mile-a-minute lately, especially on days when our three older kids are in school and it's just Tyson and me together all day. During our short walk today, Tyson did not close his mouth from talking for even a second. We are still waiting for a call from Headwaters to get him in weekly speech therapy sessions, but I am optimistic that they will quickly discharge him once they see how much progress has been made over the summer.

Anyway, I promise to post some more pictures soon. That is, if our family pics turn out ok. We had our cousin Brandy over two weeks ago and I'm not sure we could get a very good shot of Tyson; he was too busy being a big goof. When she wanted to take some pics of him by himself, he absolutely refused to take off his hockey gloves. Thankfully he did listen better to her than to me; she was able to bribe him that if she let him wear the gloves for a few pics, he would take them off to get some pics without the gloves. Later when trying to get a nice family shot, when the photographer said, "Everybody ready? Say cheese!" Tyson would either pull a funny face or burp loudly. Yes, regrettably he has somehow mastered the skill of burping on demand. Of course his brothers and sister also thought it was quite hilarious, so we'll either have a family pic with everyone laughing hysterically, or with Tyson making a funny face. I just love this kid!

Won't you please pray that we get to keep our joyful little guy for a really long time? It would break our hearts if the joy he exudes to us was someday gone. Also in the way of prayer, we'd also appreciate prayers that his heart adjusts to the Fontan circuit so that he can avoid future surgeries, and that the pulmonary vein stenosis problem will miraculously disappear.
Mel:)